Friday, October 11, 2019

Startling Reality on Awareness: Part 3 ~ Facilities Unequipped For The Most Needy- Call To Action

Today, I am taking this Awareness journey down a bit of a side street.

It's a road that many of us do not have to travel and the thought never occurs that something could be amiss.

We can't be aware of what we don't know! {One of my favorite Motto's}

Some only have to travel this side street occasionally and others, like myself, find that side street to be our main route..

What is this "Side Street" that I keep referring to??

The ability (or inability) to take care of our challenged children (and adults), while attending doctor appointments -in hospitals and otherwise..
{I am apart of multiple Facebook groups for special needs (TinySuperHeroes, Dandy Walker and Hydrocephalus groups among others). These groups are amazing and I love the help and support that I get from the other members. Brainstorming ideas to help each other, is a big benefit. I will post details on my favorite group, TinySuperHeroes, at the bottom of this post} 
In these groups I began to see the idea of "adult changing tables".
My guy is still little (not quite 2 and JUST hit 25lbs.), but even so, it is something that I began to pay attention to.
Before we know it he will be much bigger and this issue will be even more prominent than it already is.
The vast majority of hospitals, it seems, are only equipped with a standard changing station (like Koala) but there are some that are already making this awesome change to adult sized changing stations and more that are moving towards it.
That is The Best news!
Why, all of a sudden, am I getting real serious about this situation?
Our Axel has a colostomy bag. He also has hypo tone in his stomach and hyper tone in his arms and legs (basically, his arms and legs are strong, built like Popeye and his tummy is not, like Olive Oil). Add deafness and global delay and some things can get a little tricky.

We had appointments at U of M Mott's children's hospital, recently. Literally, as soon as my foot hit the doorway, I smelled the fact that Axel's ostomy bag had ruptured.

If you can smell it, something isn't right! ha

In my head I was running down my list of options;

1) The Koala changing stations are great but wholly inadequate to change my son's bag. They are 3+ feet off the ground, too small and the "belt" goes directly across his colostomy- which makes it impossible to clean and replace a new bag.

Then the fact that more than a few supplies are needed to change him- with no where available to set them and usually about 10 minutes needed to complete the process.

To add more difficulties, our little guy may not sit up or walk, but I am here to tell you that this kid can MOVE! He spins himself in circles on ANY doctors' table he comes into contact with. On his back, he pushes himself as far as he is allowed, toward the edge. Every single time. I have to hold his ankle in a vise grip to ensure his safety. So frankly, those Koala changers just make me nervous. 10 minutes on one of these could cost much more than my sanity. A fall from one would have devastating consequences. While I take very good care not to take my eyes off my guy, accidents happen all the time and it scares the life out of me, to think of it.

2) Change it on a patient bed. This seems like a great option, but mostly, those beds are in the middle of the room and there isn't a wall to "trap" him against. By myself, changing his bag (which already requires 4 hands when I only have two) without any form of security, is a no go. I need both hands to work on the bag and wouldn't be able to keep him near me, while doing so. (At home, the worst he can do is scoot away and we pull him back, but this is a whole different situation). 

A sweet nurse offered to help me hold him down on the patient bed. While I really appreciate her offer,  I recognized right away that would not help the situation. Instead, it would infuriate my little guy and cause him to cry and flail around, as he tried to beak away. Stillness is mandatory while changing his bag, so that option was completely out of the question.

3) changing him on the floor..

Honestly, it would take A LOT for me to consider this. My guy is a floor crawler (on his back, always) and I don't even want to think about what he would touch. Whether its on the clinic floor or a bathroom floor. You really have to sit back and think about the what ifs before deciding on this option. All we can do is make the best decision at that time, and pray it's the right one.

 If he had feces all over, I would have HAD to figure something out. There are certain times when it absolutely cannot be delayed.

4) The "trunk" of my Escape. This could be an option if there were fair temperatures outside, but it was chilly inside of the parking structure and winter like days are not far away. This is a struggle that does not go away, regardless of the weather ;)

5) We live over an hour away, so that's about 2.5 hours of driving, plus the time it takes to be seen and sent on our way, so just about 4 hours, before we would be home again. Most of the time that is WAY too long for us to want him sitting in such an unpleasant situation.

6) Contact the main hospital number and ask them if they have adult changing stations ANYwhere in the hospital. No, Gotcha, that was fun..... Honestly, the operator tried her best to help me. She called more than a couple of different areas where that could be a possibility, but was told they could only offer a "family bathroom". Unfortunately, those bathrooms also only contain the Koala changing station  that I mentioned as option #1.

In this case, we were lucky that his bag only had a small leak and it hadn't escaped the contraption yet, so I opted to wait.

However, when we got home, since I made that decision to wait, his stoma was suffering. It was bleeding and looked very sore and unhappy. :(
His stoma will be fine. After some TLC and extra bag changes to re-add the magical powder that makes it all better.. But it'll take a little while before mr. stoma is happy again :( ....and extra costly supplies that insurance does not pay for.. 
Through insurance Axel gets 1 bag, 1 wafer, 1 remover wipe, 1 barrier wipe and 1 half-moon tape, per day- just for his stoma. He also gets other "diaper" supplies for his vesicostomy and feeding supplies for his g-tube (gastrostomy [feeding] tube) We have to supplement everything to ensure that he is provided for each month. This life is not cheap.. With all of the things that our guy needs, it seems like an unending list that we could never hope to afford or provide.
What that means to me is... I cannot allow that situation to happen again. I will go through my options and we will have to figure something out that isn't waiting until we get home. Fortunately, staff is usually very helpful. It does really help to know that the people that care for our loved ones (for the most part) really care and want to make things easier, if they can. There just was not a perfect answer to our problem.

Should I have figured out other options? What if I did this or that.. We hate for our guy to suffer because of something that was avoidable but hind sight is 20/20, my friends and it's hard to beat yourself up over things that you felt could not be done differently.

At least not with how things are right Now..
After I am through with this thing, I will have contacted the hospitals and doctors offices that we frequent (and some we don't!) and will let them know of the struggles that most people keep under their hat, so as not to draw attention to themselves.
The sadness and powerlessness that a parent feels when they take their child to appointments, only to constantly be told that the equipment is not available to meet the needs of the very patients their providing care for daily, is unimaginable. 
I'm doing this for my amazing little guy. For newly found friends in this special needs world. For people I haven't met yet and people whom I never will.
I feel that pain. Your pain. I may be on the caregiver side of this issue, but I see how my son struggles and fear how he will suffer in the future.

We need to get the world up to speed, folks.  

In the past these things weren't available or even thought of.

THIS isn't the past anymore. 
In THIS present, THIS Era, things have changed.
The equipment exists that can change the ability and feelings of thousands of people (maybe millions??). Give them that sigh of relief when they realize they will not have to struggle today, to care for their loved one, after leaving home.
This is where I issue a Call to Action!

Click above to see the Action Letter I created for ease or create your own!
I mentioned that I will be sending letters/emails and making phone calls to various hospitals, letting them know of the huge benefits of adding adult changers to their facilities.

Could YOU do the same?!
If we all team up, we can make a real difference in the lives of those who would really value this change. While I love the idea of being able to use them, I can't help but think of all of the other people that would benefit.
More people than we realize, need additional accommodations to care for themselves. I can't imagine how reassured they would feel to know the "where" isn't an issue.  


Will you join me!?

Will you stand up and fight for those who can't and for those who fight for them??

We can make a difference!

We can't be Aware of what we Don't Know!

Get Your Awareness On!!

Do you feel strongly about something? Drop me a line and let's see if we can get some Awareness on!


TinySuperHeroes is an awesome non-profit that I discovered while researching Axel's conditions.

They have a web site and also have a facebook group for all of the special needs parents. The support they offer for us parents is crucial and helps most of us get through the rough times.

You should check them out at the link, if you know any special humans that could benefit.

You nominate them for a cape, share the link and attempt to get donations for the cape. However, even if you are not able to collect even $1, your hero will get a cape! These capes are just as crucial for our super kids as the group support is to us parents. It bolsters their confidence and helps them get through difficult things like doctor appointments, surgery, treatments and just being different. The "Patches Program" that they recently began teaches our kids some awesome lessons about themselves and other people, too.
It really is a Win-Win, for everyone!

I Sincerly hope that you will join me in pushing the world into a future where we can all flourish.

Would you mind leaving a comment or dropping me a quick email, if you have joined my call? I would really love to see how far this goes!

More than ever, please share this post any way that you would like. We need to see this change, quick!

Take Good Care and God Bless

1 comment:

  1. Amy I enjoy reading your posts! Like you, our special son is our third and its opened an entire new (sometimes shocking) world of realizing the myriad ways the environment is not designed for special needs children. As adults, many cannot advocate for themselves, and as parents and caretakers we are often unable to find the time to also advocate for their needs too. Its a full time job just sorting through the state disability paperwork and navigating this process. I have been shocked at how little support for special needs there actually is for families that are not low income. If low income, it seems like there are so many avenues of support. But for middle or high middle incomes, there is nothing but to spend down finances or have one partner quit work. This seems so unjust. But I digress! In your specific situation I would do two things. One -- start small. Find one hospital you use and make a personal appeal directly to whoever is responsible for OSHA or environmental adaptations for hospitals. Once you do this, identify 5 more and the same approach, but use your example to help convince them (and hospitals like to keep up with each other too). Second is to improve your trunk changing situation -- add a portable heater? Plan for that to be your workable, though not ideal, but possible and not totally uncomfortable place to change your son, pimp it out as much as you can to make it a good experience because you can control a lot about that environment (just not the weather, can you change him totally inside the car?) Love your energy and the blog, as well as info about other groups that support special children!! (Its Deb Irene, from the DW facebook group btw. I can't figure out how to not have it associated with a gmail I don't want to post under, so I posted anonymously).


I truely enjoy your comments and look forward to chatting or answering any questions you might have!